What does therapy look like?

Noah was 2 days old when he got his first visit from a physical therapist in the NICU. What in the world could they even do at that age, I wondered. The initial sessions were to assess his muscle tone, check his reflexes and evaluate his postural and protective responses. Since then, he has continued to receive physical therapy once a week in our home.

At first I thought the goal of physical therapy was to make Noah stronger. All right, let’s throw some baby weights on his ankles and we’re all set! Not exactly. While strengthening his muscles is one aspect of therapy, it’s really not the point. Okay, so let’s practice gross motor skills over and over so that we can accelerate the rate of his development, to encourage him to reach milestones sooner. Nope, still not the purpose. The overall goal of physical therapy is to facilitate the development of optimal movement patterns. (This page on the NDSS site has a great explanation of how physical therapy helps children with Down syndrome.) Optimal is the key word here. Children with DS don’t develop gross motor skills in the same way that a typically developing child does. They have obstacles to overcome, such as hypotonia, joint hypermobility, short stature and health issues. They find ways to compensate for these differences and these compensations can sometimes further delay development or cause long term problems. This is where physical therapy comes in. I’ll give some examples later, but first I want to explain more about the two main obstacles.

Hypotonia

Low muscle tone. This term has been thrown around by doctors, nurses and therapists since Noah was hours old. I didn’t quite get what it meant until our PT explained it to me this way. The term “muscle tone” refers to the inherent state of a muscle at rest and that muscle’s readiness for action. Think about how you are sitting when in a chair. There is some tension to your muscles even though you may not feel like you are using them. You are using your core to support your upper body to sit with good posture (hopefully), your arms are up on the arm rests or folded across your chest, your neck is holding your head upright. Now completely relax all of your muscles. You probably find yourself slouching over, arms hanging limply by your sides, head tipped forward, mouth open. This is the natural state of Noah’s muscles. He has to overcome this every time he does any movement.

Muscle tone impacts almost every aspect of development and is the biggest hurdle for most kids with DS. It affects gross motor skills (sitting, crawling, pulling up, walking), fine motor skills (holding a spoon, picking something up with the thumb and pointer finger, writing), feeding, digestion (yes, the intestines are muscles) and speech. If you have held Noah, you can tell right away that the way he holds his body is different from a typical child. As an infant he might have felt a little “floppy”. Now that he’s older his body just feels very relaxed when you hold him, like if you were carrying a sleeping child.

Joint Hypermobility

Joint hypermobility is the ability of a joint to move beyond its normal range of motion. It is sometimes referred to as being “double jointed”. This increased flexibility tends to make the joints less stable, therefore making it difficult to balance. It can also make a joint more susceptible to injury over time. Noah’s hypermobility is pretty evident if you watch him play for a while. I have names for some of his favorite flexible positions.

The dolphin: He lies on his tummy, arches and throws his head back, reaching almost all the way to his booty.

The split roll: He will be in a seated position with his legs extended to each side and then crawl forward on his hands so that he’s doing the splits. Then he’ll continue forward onto his tummy.

The sandwich: He can fold completely forward so that his face is flat against his shins.

The ballerina: I wish I had gotten this on camera, but one day he was sitting and had his left leg up with his toes touching the back of his head!

So how does physical therapy help?

Physical therapy can’t fix or improve Noah’s muscle tone, nor can exercise or diet. It is an “intrinsic property of the nervous system” and he will have low muscle tone all of his life. However, this doesn’t mean that physical therapy can’t help.

Therapy can improve posture and coordination to compensate for low muscle tone. It can strengthen the muscles around the joints of the arms and legs so they provide more support and stability. It can also improve overall motor control and increase balance. Our therapist shows Noah how to move his body in the correct ways, training him to activate his muscles and his core instead of relying on compensatory movements that may be easier for him. For example, Noah tends to contract the muscles in his back into an arched position. Our therapist has said this is common for kids with DS since the spinal extensor muscles are easier to activate and control than the core and stomach muscles. Noah was rolling over very early (when Noah was only a few days old, one nurse in the NICU told me that she came in to check on him and he had rolled onto his tummy), but the movement was all just an arching of his back with his trunk and legs following behind. Lately Noah is a contortionist on the changing table. I have to try every trick in the book to keep him from flipping over onto his tummy, which normally involves making silly faces and singing.

Here are a few shots of Noah doing physical therapy. At this stage (15 months) the gross motor skills he is working on are crawling on all fours, kneeling, standing, pulling up and cruising. Therapy is hard work and Noah does a great job at it!

Look how he's lifting one hand to hold the beads while in a crawling position. Way to go Noah!

Noah is working on kneeling while he's playing with a bell toy.

Our therapist is lifting one of Noah's legs to give him some practice balancing.

He's not too sure about cruising.

This video shows how Noah uses his arms and toes to scoot around on his tummy. This is one of the ways he has learned to compensate for his low tone. It is easier for him to scoot like this than lifting his core off of the ground and getting onto his knees. Noah can get around pretty well like this, but we hope to see him four point crawling soon. Even since this video was taken a few weeks ago, he is much more stable on his hands and knees!